Chapter 317 - Fifty Years On
Fifty years ago today we woke up together in bed in a motel, young innocents 23 and 21 years of age, in a motel patronised by Saturday newly weds in a northern suburb of Big Smoke City on our way further north to a smelly fishing village (in those days) for our honey moon. On our way through Steel City we made use of the mattress on the floor of the bedroom of the small timber house we were to return to, and have two kids, before moving on 10 years later. We also called on the neighbours to introduce her. Two weeks into our honeymoon we grew restive, wishing to furnish the house, although she has always said the weather had been bad, rainy too often, although I have no recollection of wet weather. We returned to our home on November 22nd and woke the following morning to the news that Kennedy had been shot. Our first child was born on November 21st the following year, not quite in sync with world events. My birthday falls on September 11th or 9/11 (as the Yanks say it) and we were married on 9/11 (as we say it). Being a sentimental bloke, I had hoped we might have returned to our honeymoon village this weekend but that was not to be.
Last night I woke around 1am, weeping a little as I reminisced, debating with myself whether I should take her down to Pivot City for the marriage of our eldest grand daughter, who I have told we will be there although we may skip the reception. Some weeks ago we booked a motel we had stayed at the last time we visited the city and we have bought some clothes for the occasion.
When we woke this morning I suggested we not go to the wedding. She was immediately afraid that I will blame her for our non-attendance. But never, never such blame. Our vows to each other 50 years ago included no conditional escape clauses; we stay together, hardly ever being separated, except on a few occasions when illness or work commitments intervened. Especially now, 22 years into her PD sentence, entering what some will call the "end stage" and whatever that may imply (Google it yourself). We have an option of respite for which we have been assessed and we are able to pay anyway for short periods of care. Yet we fear such arrangements, especially at night, when she may require to use the toilet or commode anywhere between two and six times between, say, 10pm and 8am the following morning. At these times she is usually unable to get out of bed by herself, requiring her legs to be lifted over the side of the bed, followed by raising her trunk for her to sit on the edge of the bed, before we lock our left arms, lift her and swing her 90 degrees onto the commode, at the same time lifting her nightie out of the way. Once she used to wear incontinence pants to bed, but such are a nuisance for commode transfers. She has had only one "accident", and that recently, and possibly the fear of this plays upon her mind to wake her frequently to empty her bladder. One night recently I measured the quantities she voided; the smallest was only 75ml. Childhood training by her parents probably left emotional scars as well to compound any PD complications. To do a "business" (as we call such activity) she always uses the loo, except once recently, when a small accident occurred on the commode. "Businesses" are for the loo with bidet and the fireman's pole on front. To date I have not been required to do any paper wiping actions; she is more than happy to rely on the bidet.
Of course, such toilet attachments are not found in motels or the homes of friends and relatives, and her awkwardness in that area discourages her from staying away from home too long. And toilet bowls positioned at the end of a narrow, one person wide corridor make assistance by a carer impossible as well as ignoring the need to take a walker in as well as no hand holds other than door knobs, hand basins and taps to be stressed while attempting to haul herself up onto her feet.
Often she calls me on the CB for assistance to pull her inner and outer pants up after she has used the bidet; I find her stooped, holding the fireman's pole with one hand, the other grasping her clothing which has fallen around her ankles, I arrive to circle her with my arms, my fingers grasping for the bands first of incontinence pants then her slacks. More often than not the waist band of the incontinence pants rolls in such a way to require untangling, and my hands sometimes require washing afterwards. We laughed this morning that 50 years ago we were so self conscious not to undress in front of each other, now I help her with most things, including sticking infusion needles into her lower abdomen.
Close female relatives, even if available, would be unable to perform some of these chores. Infrequently visiting district nurses are not on hand to assist with rescues off the loo or kitchen chairs. In respite accommodation she fears being left in large volume absorbing incontinence pants as was our ex-neighbour of some years ago, being bed-bound and having the pants replaced mid morning after a whole night of dribbling. She really is terrified of her fate should anything disable me or worse.
We both had great expectations of last Wednesday's visit to Hot Air City, expecting an increase in the flow rate of Apomine from the infusion pump or suggestions to modify her L-dopa scheduling. Although we didn't see the neuro in person, she was advised to continue the existing regime of medications without change. We are confused; granted we are facing the time of unstable reaction to medications but the "promise" of apomorphine being the way forward to improve her quality of life has yet to become reality. We have been told to use bolus injections with caution, that apomorphine is not a one way trip and can be backed out of, and now when a small change may have given enough improvement to remove the fears she has of attending the wedding (a two day trip for her by the way) no changes have been permitted.
The itchiness of her arms and face is declining, yet a few days ago the outer sides of her lower legs became very warm and pink, bumps and itchiness developed quite fiercely, needing cold packs and cloth wrapping to prevent her scratching.
I mentioned previously that after sewing for a time her hands become too sluggish to proceed. We are both beginning to doubt that the problem is bradykinesia. Yesterday she was confused when attempting to count a mixed collection of coins saying "nothing is working out", she believes she is not answering the puzzles in her puzzle magazine, doing much more "looking up" on line, has difficulty using embroidery files on her computer and embroidery machine, shows an inability to flexibly change what is written on her meds schedule sheet. For instance, I included appropriate timings for possible bolus doses, firstly around 12 noon and then 4 hourly increments thereon corresponding I thought to "OFF" times. When I realised 12 noon was a little late, a time before 1130am being more appropriate, I advised her to take that first bolus earlier at that time. She didn't wish to, for her schedule (which I had typed!) stated 12 noon. Dammit all! I nominated the time of 12 noon, surely I can be god a say take it earlier??? I intend to set up a subscribed Lumosity account for her so we can monitor changes in her cognitive abilities.
Yesterday she woke at 0515 telling me her foot was in a bag. Puzzled, I looked to find her left foot in a pillow case, the actual pillow on the floor. she had no idea how that happened. At 0815 about 1/2 hour after waking she mentioned a headache in her left temple, a buzzing in her ears, toes were tingling and she didn't remember the pillow case. While seated on the side of the bed her BP was 134/89/55 at 0825 and a minute later standing 152/99/72. By 0850 the headache was dulling and moved across her forehead.
Yesterday, our Anniversary, we went to the Club for a lunch and had a fish dish each, mine a sword fish steak with pepper sauce, too spicy for her, so she had salmon and a cole slaw salad which she found dry, needing much salad dressing and sweet chili sauce for ease of swallowing. After lunch I super market shopped, she wanted to accompany me, but soon faded and needed to sit on her walker outside the super market.
Years ago a video clip of dyskinesia reduction when a PWP wore blue tinted glasses did the rounds of the PD groups. In remembering this I decided we should shop today for blue cellophane to try it out when she was walking, even though she does not display dyskinesia at such times. Firstly we went to her favourite rag shop where she only bought some cards and on leaving her hips began to "wobble"side to side so she had to sit on her walker while I went to the cash register. She walked out of the place to a junk shop almost next door where we found some shades of blue cellophane, again she needed to sit on the walker; then into the next junk shop. In there she was unable to walk further, I attached the foot rests to the walker which was used to push her back to our car. I accused her of not taking advantage of a bolus as her difficulties began because that may have helped to keep her on her feet. Then I realised that I myself was a thick headed old fart who should have suggested the bolus as soon as I saw her difficulties. She took the bolus after getting back into the car, which possibly helped alighting from the car once back home.
After some lunch she was nodding off on her recliner before needing the loo and bed. She called for me at 1325 wanting to take her 1400 meds early because she her feet felt trapped and she woke with a fright. After 2pm she began some hand sewing, calling me at 1600 to say she was taking another bolus. Then a friend from the southern state rang so now she's chatting after I helped her up of a kitchen chair to her recliner.
In the car park at the Club yesterday we spoke to an old bloke I thought about my age. When our wedding anniversary was mentioned he told us he has been married for 67 years and he was 91 years of age; says all due to eating well and drinking grog. He advised that the last 17 years of marriage are the worst. Such is life.
I had just completed a spell check on the above when the phone began to ring; I had left my cordless extension from my dungeon with her to speak to her friend, so I was unable to answer this call. When the phone kept ringing and ringing, I stomped out to ask why she wasn't picking it up!! "I'm ringing it" she says, waving the VOIP extension in the air, "I'm stuck on my recliner and the CB radio is too far away on my trolley." An example of both how easy the disabled can become "stuck" and how useful two phone systems and a CB radio can be when a disabled person is in a bind. She needed her reading glasses.
Shortly afterwards to the loo for a business, needing rescuing via wheelchair to then get to her recliner, she being unable to walk, 20 minutes before meds time and no bolus because the last one was used at 1600. Not much flexibility is there?
Last night I woke around 1am, weeping a little as I reminisced, debating with myself whether I should take her down to Pivot City for the marriage of our eldest grand daughter, who I have told we will be there although we may skip the reception. Some weeks ago we booked a motel we had stayed at the last time we visited the city and we have bought some clothes for the occasion.
When we woke this morning I suggested we not go to the wedding. She was immediately afraid that I will blame her for our non-attendance. But never, never such blame. Our vows to each other 50 years ago included no conditional escape clauses; we stay together, hardly ever being separated, except on a few occasions when illness or work commitments intervened. Especially now, 22 years into her PD sentence, entering what some will call the "end stage" and whatever that may imply (Google it yourself). We have an option of respite for which we have been assessed and we are able to pay anyway for short periods of care. Yet we fear such arrangements, especially at night, when she may require to use the toilet or commode anywhere between two and six times between, say, 10pm and 8am the following morning. At these times she is usually unable to get out of bed by herself, requiring her legs to be lifted over the side of the bed, followed by raising her trunk for her to sit on the edge of the bed, before we lock our left arms, lift her and swing her 90 degrees onto the commode, at the same time lifting her nightie out of the way. Once she used to wear incontinence pants to bed, but such are a nuisance for commode transfers. She has had only one "accident", and that recently, and possibly the fear of this plays upon her mind to wake her frequently to empty her bladder. One night recently I measured the quantities she voided; the smallest was only 75ml. Childhood training by her parents probably left emotional scars as well to compound any PD complications. To do a "business" (as we call such activity) she always uses the loo, except once recently, when a small accident occurred on the commode. "Businesses" are for the loo with bidet and the fireman's pole on front. To date I have not been required to do any paper wiping actions; she is more than happy to rely on the bidet.
Of course, such toilet attachments are not found in motels or the homes of friends and relatives, and her awkwardness in that area discourages her from staying away from home too long. And toilet bowls positioned at the end of a narrow, one person wide corridor make assistance by a carer impossible as well as ignoring the need to take a walker in as well as no hand holds other than door knobs, hand basins and taps to be stressed while attempting to haul herself up onto her feet.
Often she calls me on the CB for assistance to pull her inner and outer pants up after she has used the bidet; I find her stooped, holding the fireman's pole with one hand, the other grasping her clothing which has fallen around her ankles, I arrive to circle her with my arms, my fingers grasping for the bands first of incontinence pants then her slacks. More often than not the waist band of the incontinence pants rolls in such a way to require untangling, and my hands sometimes require washing afterwards. We laughed this morning that 50 years ago we were so self conscious not to undress in front of each other, now I help her with most things, including sticking infusion needles into her lower abdomen.
Close female relatives, even if available, would be unable to perform some of these chores. Infrequently visiting district nurses are not on hand to assist with rescues off the loo or kitchen chairs. In respite accommodation she fears being left in large volume absorbing incontinence pants as was our ex-neighbour of some years ago, being bed-bound and having the pants replaced mid morning after a whole night of dribbling. She really is terrified of her fate should anything disable me or worse.
We both had great expectations of last Wednesday's visit to Hot Air City, expecting an increase in the flow rate of Apomine from the infusion pump or suggestions to modify her L-dopa scheduling. Although we didn't see the neuro in person, she was advised to continue the existing regime of medications without change. We are confused; granted we are facing the time of unstable reaction to medications but the "promise" of apomorphine being the way forward to improve her quality of life has yet to become reality. We have been told to use bolus injections with caution, that apomorphine is not a one way trip and can be backed out of, and now when a small change may have given enough improvement to remove the fears she has of attending the wedding (a two day trip for her by the way) no changes have been permitted.
The itchiness of her arms and face is declining, yet a few days ago the outer sides of her lower legs became very warm and pink, bumps and itchiness developed quite fiercely, needing cold packs and cloth wrapping to prevent her scratching.
I mentioned previously that after sewing for a time her hands become too sluggish to proceed. We are both beginning to doubt that the problem is bradykinesia. Yesterday she was confused when attempting to count a mixed collection of coins saying "nothing is working out", she believes she is not answering the puzzles in her puzzle magazine, doing much more "looking up" on line, has difficulty using embroidery files on her computer and embroidery machine, shows an inability to flexibly change what is written on her meds schedule sheet. For instance, I included appropriate timings for possible bolus doses, firstly around 12 noon and then 4 hourly increments thereon corresponding I thought to "OFF" times. When I realised 12 noon was a little late, a time before 1130am being more appropriate, I advised her to take that first bolus earlier at that time. She didn't wish to, for her schedule (which I had typed!) stated 12 noon. Dammit all! I nominated the time of 12 noon, surely I can be god a say take it earlier??? I intend to set up a subscribed Lumosity account for her so we can monitor changes in her cognitive abilities.
Yesterday she woke at 0515 telling me her foot was in a bag. Puzzled, I looked to find her left foot in a pillow case, the actual pillow on the floor. she had no idea how that happened. At 0815 about 1/2 hour after waking she mentioned a headache in her left temple, a buzzing in her ears, toes were tingling and she didn't remember the pillow case. While seated on the side of the bed her BP was 134/89/55 at 0825 and a minute later standing 152/99/72. By 0850 the headache was dulling and moved across her forehead.
Yesterday, our Anniversary, we went to the Club for a lunch and had a fish dish each, mine a sword fish steak with pepper sauce, too spicy for her, so she had salmon and a cole slaw salad which she found dry, needing much salad dressing and sweet chili sauce for ease of swallowing. After lunch I super market shopped, she wanted to accompany me, but soon faded and needed to sit on her walker outside the super market.
Years ago a video clip of dyskinesia reduction when a PWP wore blue tinted glasses did the rounds of the PD groups. In remembering this I decided we should shop today for blue cellophane to try it out when she was walking, even though she does not display dyskinesia at such times. Firstly we went to her favourite rag shop where she only bought some cards and on leaving her hips began to "wobble"side to side so she had to sit on her walker while I went to the cash register. She walked out of the place to a junk shop almost next door where we found some shades of blue cellophane, again she needed to sit on the walker; then into the next junk shop. In there she was unable to walk further, I attached the foot rests to the walker which was used to push her back to our car. I accused her of not taking advantage of a bolus as her difficulties began because that may have helped to keep her on her feet. Then I realised that I myself was a thick headed old fart who should have suggested the bolus as soon as I saw her difficulties. She took the bolus after getting back into the car, which possibly helped alighting from the car once back home.
After some lunch she was nodding off on her recliner before needing the loo and bed. She called for me at 1325 wanting to take her 1400 meds early because she her feet felt trapped and she woke with a fright. After 2pm she began some hand sewing, calling me at 1600 to say she was taking another bolus. Then a friend from the southern state rang so now she's chatting after I helped her up of a kitchen chair to her recliner.
In the car park at the Club yesterday we spoke to an old bloke I thought about my age. When our wedding anniversary was mentioned he told us he has been married for 67 years and he was 91 years of age; says all due to eating well and drinking grog. He advised that the last 17 years of marriage are the worst. Such is life.
I had just completed a spell check on the above when the phone began to ring; I had left my cordless extension from my dungeon with her to speak to her friend, so I was unable to answer this call. When the phone kept ringing and ringing, I stomped out to ask why she wasn't picking it up!! "I'm ringing it" she says, waving the VOIP extension in the air, "I'm stuck on my recliner and the CB radio is too far away on my trolley." An example of both how easy the disabled can become "stuck" and how useful two phone systems and a CB radio can be when a disabled person is in a bind. She needed her reading glasses.
Shortly afterwards to the loo for a business, needing rescuing via wheelchair to then get to her recliner, she being unable to walk, 20 minutes before meds time and no bolus because the last one was used at 1600. Not much flexibility is there?
posted by Kilpike | 5:50 pm
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